Finally have a diagnosis of PMR having seen a professor privately ( sad that this was necessary as goes against the grain for me), however, I was becoming desperate and getting worse.
He was amazed that I had not already been prescribed having seen the blood results and history etc... Anyway he has prescribed 20mg pred, asked me to take it this evening but after that take in the mornings, review in 10 days.
Advice re how long to take at this level and when to begin reducing? Many Thanks
I had the same problem. I kept being told I had a virus, but it was nothing to worry about. I went privately in the end as I got to the point where I could hardly get out of bed and I had to lie in one position as moving caused real pain. The private doctor suspected PMR in about thirty seconds. It was such a relief when I was given steroids. Personally I would not try and reduce for four weeks, so the steroids really have time to do their magic, with a reduction of a maximum of 10%. I was told to reduce from 20mg to 15mg after three weeks and it was a total disaster.
Thank you for your quick reply, this is the sort of advice and experience I need. It would be awful to regress after such a short time. Hopefully you went back up and are settled now?
One thing, I don’t know if you have been prescribed vitamin D with calcium which is recommended. Also you should be offered a Dexascan to check your bone density. PMR can be live changing and you need to rest, rest, rest.
You may be interested in joining the PMR/GCA Gardening group on Facebook at facebook.com/groups/6288051...
None of that, just given the omeprazole and pred to take together I assume. I think I was so relieved to actually be prescribed and treated that I forgot to quiz him on this as I have been reading the posts on here avidly. I will get him to pass me on to the GP and will ensure that this is covered. I think I will be bypassing the consultant on this now as trust has been lost.
Probably need to think about taking your Omeprazole at least 30 minutes before the Pred. Assume you are taking the Pred with some food.,
OOh yes I would. One of the things really getting me down is watching the garden deteriorate as I have been unable to do anything, had great plans for summer planting.
The Gardening link is facebook.com/groups/6288051...
I was given the coated steroid tablets so did not need omeprazole. You should not need a consultant in theory for PMR unless your GP hasn’t a clue about the illness, which does happen or you have non run of the mill problems.
A friend has solved that problem by allowing two teenagers to come to work in the garden under her instruction as part of their home schooling - they are learning, she is getting the heavier work done. Maybe worth looking locally for young would-be gardeners?
Oh I very much feel this. Same happened here, but what can you do? Our health is more important.
Hello there - yes I have the same problem watching my garden deteriorate, although I managed to get someone who lives about 20 miles away. It has been ongoing now for weeks, large rubble sacks left on the grass, hence my nice little lawn going to pot and nothing I can do about it. Help is so difficult to come by and then the cost is exhorbitant - thank you for allowing me to let off steam I feel a little better now and looking forward to meeting friends for lunch. Thank you for keeping me more buoyant than I might have been without all the input x
Enjoy your lunch!I think it requires a real psychological adjustment to let go of the frustration at not being able to do the things we are used to. I'm working on it, some way to go yet but we'll get there.
Thank goodness you saw the private doctor. I was left over 7 months with fob offs about needing to get used to ageing at 78. This means that getting the PMR to burn out will take longer. The young female GP did sort of apologise and has now left for maternity leave - good on her.
I am now 81 and under a senior, practical GP partner in the practice. Down to 8 mg under the split dose regime. 6mg at around 2 a.m. and 2 mg around 3 p.m. and enjoying less stiffness and all the other things for the mornings. So thank you to our ambassadors for that good advice. My GP really appreciates the advice we get on HU/PMR too.
Enjoy whatever the weekend has to offer everyone.
Well if it’s being reviewed in 10 days then obviously no reducing before then. Usual is about 3 weeks on initial dose, but it really depends on your reaction… so get things under control before you start to plan ahead.
Maybe have a look at this -
healthunlocked.com/pmrgcauk...
Thank you. I will
Just read through, so helpful.
Hang on to it -it will make a lot more sense in a few months time 😊 ..
Yes, my GP had me on starting dose for 6 weeks before any reduction and thereafter reduction led by symptoms and a speed to suit me
Like piglette, I was told to reduce from 20 to 15 after 3 months at 20, and also had a late diagnosis. Disaster likewise. I really feel that being diagnosed very late affects the rate at which you can taper. Now trying 17.5mg.
Follow his instructions until you are safely down to 15 mg then taper slowly. If you find you are coping well, continue or else stay at 15 mg for another few weeks and drop down accordingly. It is very much dependent on the individual. Good luck and remember this group is always here to support. I have found them amazingly helpful during my journey.
Glad you have found someone sensible. However, guidance on all the bits to go alongside is often missing, but here on the forum. I have coated pred, but seem to remember seeing something about not taking omazeprole at literally the same time - an hour or 2 gap? Could be worth checking.
He has said "review in 10 days" - how long you remain on 20mg depends on the response of your symptoms and the doctor. Many these days don't even start at 20, they begrudgingly give 15 and whether the patient's symptoms are well managed or not start to taper very soon. Our experience is that a good 3 weeks is necessary and sometimes longer. And the next common mistake is to try to reduce the dose in large steps - 20 to 15 is far too much at one for example. Top experts say "not more than 10% of the current dose" which is a reasonable guide but even so can be too much for some. It also gets harder at the lower dose and other ways of spreading the change of dose have to be looked at.
The time scales depend on you and how you respond to dose and reductions quite a bit, If it works, the pred has cured nothing, it is a management strategy and you are tapering the dose in a process called titration to identify the right dose for you at any given time. You aren't heading for zero relentlessly whatever happens. You are looking for the lowest effective dose, the lowest dose that gives the same level of relief as the starting dose did. It will be higher earlier in the journey than it will be later but there is no definitive figure at any point. You reduce the dose in small steps until the symptoms return and then go back to the previous dose that was good - obviously you need time at each new dose to be sure and the smaller the steps, the more likely you are to not end up on too high a dose.
Heavens, all this advice is so clear and useful. It is also reassuring, I think one of the worst things with a very cautious consultant has been the feeling of powerlessness and lack of control, hence the private appointment. I had read on here the stories of those suffering for many months and even years with this and my heart goes out to them, I couldn't manage 2 months.
After my first dose last night, woke this morning and got out of bed without a struggle or pain, miraculous really. Still some bicep discomfort but nothing like it has been.
He wanted me to take another 20mgs this morning but I'm waiting a bit until 2.30 then start the morning doses as directed. Just thought another 20mgs so quickly might be a bit over the top.
Taking 20mg this morning would have been fine- so please do that tomorrow.
When I started (albeit different circumstances at 80mg ) I took my first dose around 2-3pm and second dose following morning at 8am.
Wouldn't hurt!! Would have really got a speedy response but it seems you got that anyway. You might have had wings for a while though!
I did, lesson learned
listen to the lovely people on here. my Doc started reducing fast I have GCA and my sight started to deteriorated. so went from 20mg back up to 40 down to 30 and going down to 25mg next week . and I got Diagnosed this year! .I now ask on here AND I have the courage to question my rheumatology lady if I think she is moving too fast.
I appreciate this site so much as I never knew theesev2 awful diseases b4
In 2010, after 2 years of pain which had spread from my shoulders to my hips, I was finally diagnosed with PMR after being told by my GP that the pain was a wrench injury and would eventually get better.
I reached the point where I could not get out of bed anymore and fell out onto the floor. Then draggedmyself upright with the bedding. I had fallen backwards twice in the bath whilst taking a shower. Covered in bruises!
As usual, I dosed myself up with ibuprofen and made an appointment to see another doctor. She diagnosed the same illness that my father had had years before and put my on 30mg of pred.
My father rarely discussed the illness much and could never remember the name of it.
I saw a specialist who said I was classic PMR and wrote that to the GP who has misdiagnosed me.
Since I was diagnosed, I've had 2 relapses and am still on low dose steroids.
Reducing pred only became difficult after I got to 17.5mgs initially, but after the two relapses, when I was on low doses, I just went back to 5mgs and was fine after a few weeks.
Thank god for prednisolone I say. It never wrecked my bones or affected my eyesight.
Keep active, ditch sugar and drink plenty of water and eat salads. I often take a multivit/mineral pill just in case.
Guess living in a 3 storey house helps, but not when your cat runs in front of you during a relapse and you lose your balance and fall down them.
Your private consult Doctor seems to be on it. I am sure he will go over a reduction schedule at your 10 day review and you can tell him you are following this information and support group which recommends slow reduction tapers for best results. I went from 7 days at 20 mg to 17.5 mg for 7 days to 15 mg for 14 days then 12.5 for 14 days as the symptoms had disappeared and there was no need to stay at higher doses once the inflammation had been cleared up. After that, I slowed the taper down and followed the flare protocol from this site if needed and after doing that a couple of times, started reducing only by .5 mg at a time using the 5 week taper schedule and holding on present dose if there were any symptoms present before trying to taper again. 9 months in, I'm now at 8.5 mg and going slowly. Felling good.
Wasn't told to take Vitamin D and K2 and developed osteoporosis, but am taking it now and doing weight-bearing exercises, hoping to avoid osteoporosis medications and their side effects.
This group has helped me a lot and I am lucky that my GP lets me manage my dose according to their recommendations.
One thing I just don't understand is private Dr's usually work for the NHS as well. Are they told not to diagnose someone as this will be another person needing drugs prescribed? They should have the same opinions anywhere.
Depends on the doctors - Rod Hughes is the same whether you see him privately or NHS though of course he has more time to allocate to you when he is being his own boss. But a bad at PMR NHS doctor is mostly a bad PMR doctor when seen privately too, There are a lot who just don't take PMR seriously and don't have the patience to deal with it. It just isn't the same as an inflammatory arthritis.
Yes I have both it never feel I am taken seriously. I get 30 minutes NHS Dr but a private one also is a 30 minute appointment. My rheumatologist is at the private hospitals also the rest of them at the 2 private hospitals are from the same NHS hospital I go to.
I agree. My private prof was a little gun -ho in stark contrast to my consultant who was over cautious. Did not feel that he lacked experience or knowledge but challenged him to explain why it wasn't (insert list of other conditions). I was certainly using up my 20 expensive minutes. He was compelled to refer me to a paper he has written on prescribing for PMR (haven't yet). Partly his presentation was exasperation at the lack of diagnosis and prescribing. He did not advise how to take the omeprazole or when for best results. This is the best place for that, now I know.
I guess that my objection to private medicine is largely political, while I was waiting in this very plush environment couldn't help to feel guilt that so many people weren't able to afford this and would continue to suffer. Seems very wrong.
But the other way to look at it is that by going private you leave a space for someone who CAN'T afford the private option and it shortens their wait The decline of the NHS started when Labour removed Pay Beds from NHS hospitals. In Germany I had scans when I was pregnant that were done free on the equivalent of NHS because their private wing funded the machines and they were made available to the plebs at less convenient hours - I remember having a scan at 11.45 PM! But I benefitted by having it. There are state funded and private hospitals in Germany and here. There is a basic level of cover provided by law but you can buy private insurance as a top-up, the two work in tandem, and here the private clinics sell unused capacity to the state system. Whether the procedure is done in a state or a private facility, it must be costed and paid for so if the state system is overwhelmed - why not buy in the services? Not in the US way, that is horrendous, and that is the model the UK always thinks of, but there are other models that work well and healthcare, free at point of delivery is there for anyone who needs it.
My bad, should not have ventured into politics, such a no no. Suffice to say privatisation of our NHS does not benefit our NHS in any way but it is a long conversation and I apologise for introducing the subject. It was more about how it made me feel being there given my principles, shows the level of desperation I suppose.
I wasn't meaning to be political in any way - I worked in the NHS at the time and you could see the advantages of the piggy-backing that can happen.
As far as tapering is concerned, I think it's usual to be left on initial dose for no less than a month. Tapering should be done slowly, or at least in small steps. My initial taper was actually a bit different from any I've seen on here, I started at 15 mg. Great results, all pain gone in less than three days. My doctor had me back after a week, said to stay at 15 for four weeks, then reduce by 1 mg a week, stopping the reduction if there was any return of symptoms. This happened at 9 mg so I went back to 10 for three weeks, then with my doctor's okay (although I was going to do this anyway) began a slow taper method (Dead Slow Nearly Stop, but there are others) which got me without incident to 3 mg by the end of the first year. (Full disclosure, was then on pred, usually at about 2-2.5 mg for the next eight years, only achieving zero, hopefully successfully, four or five months ago.)
When people start at 20 mg it seems quite common to be told to reduce by 2.5 for the first couple of tapers, usually staying on the new dose for a month. Many find this a bit difficult, although theoretically it should be okay to get to 15, but after that a smaller step is advisable. Note that my first optimistic and successful tapers from 15 mg got me to 10 mg only two months after starting pred, which in retrospect I now realise was lucky.
YOu also did very well getting to 3mg in a year - and you do have to wonder if you had stuck there whether you;d have had no further problems.
Yes, like the doctors who say stay at 5 for six months or even a year and find their patients do much better afterwards, maybe the 3 would have done the same for me, and zero would have arrived sooner. Oh well, too late now. I did have a doctor who told me she was happy with me being at 3.
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